‘It all started one day when…’. That’s how these things are supposed to start, aren’t they? The real truth is that I don’t know when my M.E. journey started because I don’t really remember living without it.
What I do remember is being told to get on with it at nine years old when I complained about a stomach ache or not feeling well at school. What I do remember is suffering pain, sickness and fainting every day as I pushed myself to go to school. What I do remember is the confusion and mental health struggles that came alongside a two-year wait for a diagnosis, only to be told that nothing could be done. What I do remember is how hard it was to slot back into the rollercoaster of teenage existence on the days when I felt well enough. I can’t put all of the blame on M.E., there was actually a range of things that made my childhood and adolescence a difficult time, but my journey up and down the M.E. disability scale has by far had the most significant and undeniable impact on my past, present, and future.
Welcome to the real M.E.
By the age of nine I was already aware that I had a reputation for complaining about pain or feeling poorly a lot. I distinctly remember thinking ‘I won’t tell anybody about this pain because they won’t believe me anyway’. I never knew what was wrong or that what I was feeling wasn’t what everybody else was feeling. All I remember is being in pain and feeling horrible and embarrassed. I’m a teacher now, about to begin my first year of teaching year one, so I understand that children complain and fuss. I’ve even had a lovely little girl draw a red dot on her finger in felt tip and ask me for a plaster. I understand. But I also understand my feelings of embarrassment over feeling poorly or weak at just nine years old. Don’t get me wrong, my primary school teachers were really lovely teachers. Fifteen-plus years ago many teachers had no idea what to look for, when or how to help, particularly in a small village school in the Devon countryside. I soon learned that my experience of M.E. would continuously revolve around the fact that people don’t understand. They don’t know what it is or why it happens and they don’t try to learn.
By the time I was twelve things were a different story. My pain, sickness and episodes of fainting had got steadily worse. I passed out every time I did any exercise, slept for hours following physical education lessons, working for any length of time or even if I just walked too far that day. I didn’t have a diagnosis then, so my sickness felt unpredictable and I felt constantly anxious about what I was doing and, more importantly, what I wasn’t able to do any more. I don’t remember too much from this time: the thick haze of brain fog has blurred everything over. What I do remember is being really confused, which had (and continues to have) a monumental impact on my mental health. What I do remember is hating myself and hating my body for failing me every day.
Over the next few years I continued to deteriorate and struggle until I couldn’t go to school anymore. I want to begin by saying that my secondary school were very accommodating. They arranged for me to have tutors come to my home to teach me Maths, English and Science. Without this I wouldn’t have any of the seven GCSEs that I scraped myself through. I would have a maximum of two one-hour lessons at a time, after which I could collapse in bed for the rest of the day and night to recover. However, being proactive and trying to help does not mean they had any understanding of M.E. or what I was going through. On days when I could make it into school, I had to attend all lessons, including P.E. which was always a double lesson. Inevitably this ended badly. Every time I did physical exercise the least painful thing that happened to me would be a fainting episode, after which I would be scooped up, often by other students, and carried into the school reception and fed biscuits as a cure. I have one distinct memory of waking up on the floor, having moved from where I fell, with food already in my mouth and wondering what on earth was going on. I will be forever grateful for my qualifications but forever disappointed in the lack of understanding, even after my diagnosis.
This severe phase in my health lasted for two years and was the lowest point for me. I had reached 80% on the M.E. Disability Scale and was not functioning on a daily basis. I spent almost all of my time stuck in bed, and any other activity would push me further into the exhausted, achy, brain-foggy abyss. Throughout this time my mum was my champion. She took time off work to take me to various medical appointments and fought for me to finally get my M.E. diagnosis at fourteen years old. Then we were told that nothing could be done. That was the last time that I saw a doctor or paediatrician about my M.E. No treatment, no support, no follow-ups or check-ups. I am twenty-six years old now and nobody has checked up on how I am doing.
After all this struggle I managed to return to school for sixth form part-time and crawl my way through some A-levels, I studied with The Open University part-time for six years to complete a degree and have just passed a postgraduate course, ready to become a teacher this September. My physical health has improved, slowly and surely, but my mental health is still a bit of a minefield. I don’t believe that there is a ‘recovery’ from M.E., not really. The M.E. disability scale goes down to 0% and even though I have been able to return to full-time education and function in daily life I am far from considering myself at 0% and doubt that I ever will. Currently, I am living at 10% on the M.E. disability scale. I feel so privileged to have reached this point after years of confusion, struggle and fighting to keep myself going when giving up would have been much simpler and less painful.
That said, M.E. does continue to have a huge impact on my daily life. If I push too hard, I still collapse with exhaustion; if I work too hard, I still sink into the brain fog; if I do too much, I still get the intense muscle aches in my legs. I am forever grateful that my limits may be different to what they were ten years ago, but the effect of overdoing it is still the same. Living with M.E. means never being fully energised, but making the most of the energy you have whenever you have it and wishing every day with everything that you have that you’re lucky enough to feel okay tomorrow.
For me, living with functional M.E. is also living with the duty to increase the awareness of as many people around you as possible. It is incredibly ironic that my birthday is on May 12th – M.E. Awareness Day; I take full advantage of exploiting this fact to share and fundraise and spread online awareness as much as possible. Even now, in 2019, people that I meet tell me that I had ‘yuppie flu’, that I was just tired or lazy and this is what has to stop. As an adult this doesn’t faze me, but as a teenager the reactions of other people shaped my mood, my self-esteem and my identity and that is not acceptable for the tens of thousands of children and teenagers with M.E. today. The first fight is to get yourself down the M.E. disability scale, the second fight is educating the rest of the world on the reality that 250,000 people in the UK alone face every day.
This is the real M.E.
The Young M.E. Sufferers Trust is the only national charity dedicated to children and young people with M.E. and their families. Action for M.E. provides a wide range of information for children and young people, along with their parents and carers.
Were you diagnosed at a young age? Are you the parent of a child with M.E.? Please consider sharing your own experience with M.E. Support.