ME Awareness: “I suffered without help for so long, we went to every doctor and agency without answers,” by Ellyn Gould | 16 May 2020

May 16, 2020

Getting my GCSE's while living with M.E. by Ellyn Gould.

Year 9 at school is usually considered the worst year for faculty; the noise, the ruckus and the apparent loss of manners may arguably be the reason.

Ellyn Gould is 14 years old and reflects on her experiences at school with M.E.

However, as a student you feel on top of the world and in your prime (if that is possible at the age of 14).

Arguably this is the year you make the memories that last a lifetime, it is the age when mistakes are forgivable, and experiences shape our outlook on the world.

Unfortunately for myself and many like me an illness took the years, the memories and the experiences away, this illness is called myalgic encephalomyelitis.

I have had M.E. since the end of year 9, I am 3 years into my journey but only 1 year diagnosed.

I suffered without help for so long, we went to every doctor and agency without answers until by chance, when I became ill with a liver condition.

The gastroenterologist in charge of my care was the first to listen after forever searching for answers, she worked with a psychologist who had spent many years working at the ME/CFS centre in Bath.

For months after this we were passed from centre to doctor to psychologist to centre until finally, I was diagnosed at the beginning of last year.


The Lost Years is one of our themes for ME Awareness Month. Join the discussions on MEA Facebook.

You don’t realise how much you’ve missed out on until you stop and reflect. Reflecting on the past is overwhelming and you recognise how much time something as seemingly small as an illness has taken from you.

I reflect to see the months I spent in pain and the hours I slept whilst the world outside carried on, without me.

It’s easy see the impact M.E. has caused me but I can’t forget the pain and suffering it caused to the loved ones around me.

My mum has been my rock and supported me at every step and hurdle along the way, she has been my nurse, my taxi driver and most importantly my friend.

During my worse phase of M.E. I was nocturnal and spent much of the day asleep my mum said I was wasting away, and she couldn’t do anything to help.

Problems with school

M.E. massively affected and still affects every aspect of my life. Attending school was a huge hurdle for me and one I still struggle with.

There were weeks at a time when I was physically unable to attend my classes.

Eventually my attendance was so low the deputy head and head of welfare came to my house one morning.

The teacher was fully aware of the reason I was not attending, but she suggested we take away my phone and bedroom door and if this did not work she would get me sectioned!

This moment was the first time I was made to feel that M.E. was my fault or in my head (this is definitely not true). My mum was eventually forced to de-register me from school due to the school threatening prosecution.

We later found out that there were 12 other students in the school with M.E.

I was passed through the school system with promises of support only to find out that attendance was above all, our local council offered no alternatives.

A school for people with disabilities

This school was a godsend, they were very small, but they truly cared about the welfare of their students.

As time was creeping closer to my GCSE’s we were growing increasingly worried about my education.

Then a family friend suggested The Voyage Learning Campus.

It's a school for young people like myself and with other medical conditions.

This school was a godsend, they were very small, but they truly cared about the welfare of their students.

When I was unable to come in it was no big deal and the teachers ensured that when I returned, I was fully caught up.

Thanks to them I passed my GCSE’s with flying colours.

Social loss

  • M.E. caused me to lose friends and miss out on the parties and sleepovers, this can be hard especially when you see it all over social media.
  • M.E. causes massive strain on relationships, I was in bed all day so when I was invited anywhere, I had to decline, over time friends stop inviting you out and slowly you lose contact.

It’s difficult to accept I don’t have a normal life and hard to see a future where M.E. doesn’t control me, but I stay optimistic.

I am not the only M.E. sufferer out there and there are people going through a harder time than I am.

I do miss the time before M.E. and still wonder how different life would be if I didn’t have a disability, but I try to look forward to the future and not to dwell on setbacks.

ME Awareness Week Monday 11th – Sunday 17th May 2020

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