Reprinted with the kind permission of Anna Jones and M.E. myself and I.
I've given this a lot of thought and I've decided it's very hard to put into words. But that in itself sums up what life for a young person with M.E. is like. Incomprehensible. Unexplainable. Alas, I will try my best.
My story is very similar to yours. I was the all-rounder, got very good grades, was captain of the sports team, represented the school as Deputy head girl, got lead roles in the school plays, and was popular with both my peers and my teachers. I was 21 when I became ill and I choose to see myself as lucky that M.E. hit me when it did; after school and university but before I'd started full time work, bought a house or had children.
To miss out on 'the best years of your life' is soul destroying. Many, if not most, young people with M.E. are missing out on an education. I on the other hand have the qualifications but they are redundant, useless and likely to never be of use. I feel like my life never got going. The wind was taken out of my sails within a few weeks of graduating from university.
I had no idea that life could be like this. As you grow up you don't dream about a life like this. You dream about travel and university and earning your own money, living in your own home, meeting the perfect partner, starting a family… Very few, if anyone, is prepared for a life like this. A life so at odds with the norm. It is scary. Disney did not prepare us for this!
My friends are starting to get engaged and talk about marriage and starting a family. When we discuss our days, mine is worlds apart from theirs. The token response is that I'm still so young and have plenty of time to build a life like that for myself, that I don't know what the future holds… I won't lie, it gets on my nerves now.
As a young person with M.E. there are the expectations of society to contend with, not just your ill health. Elderly people tutting at you for not giving up your seat for them. Being told you're "much too young and attractive" to be in a wheelchair. People seem confused by it; that we are so young and yet apparently so ill. Surely not? Surely you're at your fittest and healthiest at this age? I thought that was how it was supposed to work, too!
But with youth comes resilience, naivety and the bounce-back-ability needed to just keep going. To just keep trying. We may be physically weak, but we have a superhuman strength with which we cling on to the hope that things can and will improve.
There are opportunities available to us now that were never there before. We can get an education online. We can craft or knit or sew or make jewellery and then sell our makes as a way of doing something worthwhile. We still have hopes and dreams… they're just a little different from the hopes and dreams of our peers. We've adapted them. We hope to stay out of bed for a whole afternoon or walk to the local post box or read a book or never have to be spoon fed again…
As young people with M.E. we're learning to create our own norm. We join online communities and meet friends for life who live in our computers. We meet up everyday and virtually hold each other's hands as we navigate our way through the fog of chronic illness.
Life for a young person with M.E. is unimaginably hard. The future stretches out in front of us and while the future is always unknown, it can look incredibly bleak from where we young poorly people are standing (or sitting, or laying)! I am a firm believer though that every cloud has a silver lining, and even this huge, unruly, destructive grey cloud that they call Myalgic Encephalomyelitis has the glimmers of a sparkling outline. There are a handful of people who are fighting in our corner for us. People who use their time and precious energy to run online forums for sufferers, who volunteer to work for the M.E. charities, who use their skills to make documentaries highlighting the side of illness that no-one sees. And then there are the people who help us make sense of the medical terms and jargon. They try to guide us through the minefield of treatments for CFS/ME and chivvy us along when we’re not sure how much more we can possibly take.
Anna (26) was diagnosed with CFS/ME in 2010. She started the popular M.E. myself and I blog in 2011 to try to explain the complexities of this illness to her family and friends. A couple of years ago, Anna decided to throw a virtual and real life tea party to raise funds and awareness of CFS/ME; It was something she (and others) could enjoy whilst sitting or lying at home with her feet up. Her ‘Blue Sunday’ tea party was such a success that in 2014 it was adopted by the British ME Association as their official ME Awareness week fundraiser. This year's event will be held on the 17th May. You can find out more at her just giving page.