Finding Me with M.E; my story so far
No one can prepare you for chronic illness – especially if that illness is M.E. Two little letters can completely dominate your life, changing everything you knew to be true, only for outsiders to doubt your reality as though anyone would choose something so misrepresented to be their life sentence.
I’d not heard of it, before being diagnosed. A quick google was enough to show me the stereotypes, how under-researched and under-funded it was. I’d fought for over 4 years to finally have a name for what was wrong with me; only to be told there was nothing that could be done for me.
Like too many of us, I didn’t know back then of ‘pacing’ and ‘budgeting energy.’ Sure, things took more out of me than it did my peers, but I could keep up appearances. Until I couldn’t.
Why is it that we think it won’t happen to us?
I’d pushed – long enough that I broke in two. Eventually, I had to give up studying, living away from home, or going out alone/without a mobility aid. My physical and mental capacity was significantly impaired and to say I felt lost, was an understatement. Everything that I thought about myself, the foundationsI defined my sense of self around… all of it disappeared, seemingly overnight. There were months at a time where I couldn’t even leave my bed, relying on family to feed me or help me change. I’d gone from the fiercely independent, always energetic performer, to practically comatose in my parents house.
That’s the thing – becoming disabled doesn’t always happen with some huge event, like we’re taught to believe. I didn’t have a car crash that broke my bones, I didn’t require round-the-clock medication (because they wouldn’t know what to give me). It happened very slowly, and then all at once. I caught a bug in high school, one that a few others had. For some reason, I was the one that didn’t get better.
Over time, the smaller my world became, the more I searched for something to tether myself to. In time, I stumbled upon the chronic illness community on social media. It’s not like anyone had given me a handbook to navigate all this, or told me where to look. But out of nowhere I found hundreds of people just like me, somewhere in the in between of existing and living. I’d reach out and connect with some, and in doing so would be asked about myself. It was around then that I realised I had no idea who that was anymore.
I’d always been described as loud, energetic, always doing something. Could I still use that description, when it was nothing like my reality? I loved performing on stage, lived and breathed musicals, yet could no longer remember the last time I had listened to one, never mind saw on or starred in one. It caused this identity crisis that I didn’t seem to find anyone else talking about at the time. I remember, one particularly stable day, I pulled out an old university notebook and flipped to a clean page, writing my name in the centre. I was my new project, and I wanted to learn as much as I could about who I was, with the life kicked out of her.
I asked friends and family how they’d describe me. Words like curious, loving, empathetic, passionate. Although I’d always tied them to physical or mental actions for others, at their core, these were still huge parts of my identity. I wanted to help others, in whatever way I could. I loved connecting with people through art, from written to spoken. I wanted to experience as much of life as I could, even from my bed. I still felt like I was born for the stage, in one way or another.
I couldn’t have the life that I’d planned on. But then again, maybe this is the one that was meant to happen, after all.
I wasn’t about to push my body any further, so I had to find a way to capture these parts of myself and bring them to life in my own little world between four walls. In a community of people just like me seemed to be the best place to start, so I created an account to document the story so far. It wasn’t the study of the psyche or social structure – it was the study of everything that made me, me. And Ellieology was born. In the last nearly two years on social media, I feel I’ve experienced more life than ever before. Partly, because whenever my body allowed, I have a tendency to run headfirst and soak up life as much as I could, travel whenever remotely possible, do and wear and say the things I’d kept so filtered before. But it was also because I became more grateful and excited about the things that one upon a time I’d taken for granted, assuming they’d never run out. If nothing else, having M.E. made me realise how fragile and short life really is, regardless of who you are, or how healthy you think you might be. I didn’t want another day to go by, even from my sickbed, where I didn’t carry immense gratitude for what I had and a list of things I was going to do the minute that I was able to.
I hate this disease. I hate that it exists, that so many people around the world suffer in silence because they do not have the capacity to shout about it from the rooftops. It became and continues to be part of my approach to life; to document my life with M.E, on behalf of those who couldn’t. I could wake up cured tomorrow (if I eat my greens and do my yoga… /sarcasm) and I would still spend my life doing what I can to raise awareness about this condition, fundraise for research and fight the stigma that couldn’t be further from reality. There is no such thing as a lazy ME/CFS sufferer. Not only did almost all of us have incredibly active lives before getting sick, we are also some of the strongest, most resilient people you’d ever encounter.
So, I’ll keep talking about it. I’ll keep showing my highs and lows, the preparations and consequences that go into any kind of special occasion. Is it going to change the world? Probably not (although, I’ll never rule it out). But for some girl out there, newly diagnosed and wondering where the hell to look for guidance, I can breathe a little easier knowing my name will be there as a resource.
Having M.E. means I’ve accidentally discovered a whole other part to my being. WouldI have found it, if I’d never gotten sick? It’s not a game I can play, in my opinion. This is the hand that life dealt me; it may be shit, but that doesn’t mean that I couldn’t do my best to cover it in glitter. My energy is already limited – I’m not going to use to think of how it should’ve been.
Turns out, you can take the girl off of the stage, but you can’t take the stage off of the girl. My platform may be digital now, but I will, in my own kind of way, do my best to leave this world and the people in it a little better than whenI found it. Whether its singing and dancing, crying and crawling, or wheeling in style; here’s hoping the world will know my name.