Childhood ME


I know I have spoken before about this being my second bout of M.E but I have not really elaborated on what my life was like during my teenage years and how M.E changed my life.

Let me clarify, I was never diagnosed with M.E. I underwent a wide range of tests during a 2 year period but doctors were baffled about the cause of my symptoms. It is only with hindsight, and the fact this (diagnosed) bout feels exactly the same that I know I had M.E as a teenager. Since starting my Foggy campaigning, I have discovered it is not unusual for someone to have M.E in childhood and again in later life.

My symptoms started at the age of 14. In the UK, we start making important schooling decisions around that time. What do you want to do in the future? What qualifications will help you to get there? My GCSE options years were extremely stressful as I am a worrier. I worried about absolutely everything and anything and I finally had something BIG to worry about!

Funnily enough, my memory of that time isn’t great! I don’t remember a specific trigger. I wasn’t struck down with a virus as with this second bout. So, I believe stress was my trigger the first time around. I was away from school for at least a year in total (over a 2 year period) and studied at home where I could regulate my own energy levels. When I did venture in to school I could barely make it past lunch time before extreme exhaustion and dizziness struck. I built a fantastic relationship with the school nurse who would let me sit quietly whilst waiting for one of my parents to come and pick me up.

My parents were exceptionally supportive and were concerned about what was happening to their little girl. It must have been an incredibly difficult time for them as the medical profession didn’t have a clue what was going on. One particularly traumatic episode for my mum was when she had to take me to the STI clinic to be tested for STI’s. Our GP wanted to rule out sexually transmitted diseases. Now, I realise that some 14 year olds have sex BUT I had been virtually housebound for over a year at this point! To say my mum was not impressed would be an understatement, she took it as a personal attack on my virtue.

M.E robbed me of what should have been the time in my life when I carved out my own identity. AllĀ of my friends were having sleepovers and movie nights out. They were in school gangs and had built strong relationships. Even now I find group nights out slightly alien, it’s not something I grew up with. I had one best friend who kept in touch but that friendship soon faltered over time. It was an incredibly lonely time for me but I strongly believe it made me the person I am today. I can fight adversity against all odds and know I will come out the other side alive and kicking.

M.E didn’t beat me the first time around. I came away with 9 GCSE’s above grade B and went on to college and later university (undergraduate and postgraduate). The fact that I have got over M.E once gives me hope that this second bout will end one day. The childhood bout ended overnight, almost as if it hadn’t happened. I live in hope that one day I will wake up feeling…..refreshed!


(and Foggy OBVIOUSLY!)