ME Awareness: “These lost years have been a grieving process; a loss of a past life that seems so far away,” Naomi Gilchrist | 24 May 2020


The Lost Years by Naomi Gilchrist.

M.E has taken many years of my life away from me. New Year and birthdays are especially difficult as they are a cruel reminder of what M.E has taken – another year of being ill and another year ahead of me filled with being ill once again.

“Many times, I was met with the response that my illness didn’t exist, and I was just living with ‘medically unexplained symptoms’.”

Before I became ill I was very active, I danced, I enjoyed yoga, the gym and swimming and I biked and walked to most places.

I was also at University doing an undergraduate masters in nursing which had taken a lot of hard study to get the grades to gain a place on the course and also the hard work that it takes to medically train. 

February, marked 6 lost years to M.E. Six years with my life on pause, just waiting. Waiting for a diagnosis, waiting for help and support, waiting to be believed and listened to, waiting for my life to begin again, and waiting for a cure to come along. 

It took me a while to get my M.E diagnosis – more years lost trying to find out what was wrong with me. I had repeated infections followed by a recurring diagnosis of Post Viral Fatigue Syndrome before my official M.E diagnosis was given. I felt a sigh of relief then knowing what was wrong with me and a final end to stopping blaming myself for the way I felt. 

Until I got my diagnosis I’d actually not known very much about M.E. and so the research began in earnest. 

Then there where the years lost trying to get help to put a halt to my steady decline. I spent so much time trying to ask for help; most of which I had to do myself whilst also dealing with being ill full-time.

Many times, I was met with the response that my illness didn’t exist, and I was just living with ‘medically unexplained symptoms’. Other Drs. said there was no point caring for me as there was no cure or treatment for my illness.

Survival

“I wish I could turn back those lost years. If I could, I would continue with my education, I would get a job that would help me towards my dream career.”

Some Drs told me they couldn’t help me as I wasn’t within their geographical area – I live in an area with no M.E. services and all those “nearest” to me only take patients in their immediate area.

It seemed a ridiculous rule, surely you should be able to access specialist care regardless of where you lived but those areas had a big case load which shows the extent of this illness. 

I spent my lost years trying my best to survive. My health would decline; then would stabilise only for it to decline again; no real improvement came my way and most of this time it was me that was putting in the work to care for myself.

I wish I could turn back those lost years. If I could, I would continue with my education, I would get a job that would help me towards my dream career. I would do the things I love like volunteering and hobbies and adventuring working my way through my bucket list.

I would be making friends, seeing people, going out for coffee or a day’s shopping and I would dance. Oh, what I would give to dance again!

But sadly, for now, all those things are lost and instead I live within an existence of surviving to manage my M.E and get through the day as best as possible. I’ve had to adjust my life in so many ways.

Grieving process

We have been featuring your stories every day in May to help raise awareness about M.E.

I’m in my 20’s and I’ve at times depended on others to do the most basic tasks for me – I can’t think of many people my age who would want someone to shower them and for it to be their only wash that week.

As well as the big things that I’ve lost there are little things lost in these lost years. I miss going outside and I treasure the moments when I can sit outside in the sunshine. I also used to love doing jigsaw puzzles, but I just can’t concentrate on them at the moment. 

These lost years have been a grieving process; a loss of a past life that seems so far away. I’ve had to change so many elements of my life to manage a life with M.E and at times there has been little support to help me do this. Although, I can now report that I have received long-awaited support through an inpatient rehabilitation stay.

I hope that one day I will be able to use my lost years to help others by raising awareness of the plight of those living with M.E.

Often we are invisible to society, our symptoms can’t be seen and for many including myself we are invisible because we are too unwell to leave our homes.

I also want to make specialist care available to all regardless of where a person lives. I want these lost years to matter.

ME Awareness Month – May 2020

Read the stories and announcements from ME Awareness Month.

The Lost Years

Check out the MEA Media Toolkit for video, free factsheets, posters and graphics.

The ME Association

Please support our vital work

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!


ME Association Registered Charity Number 801279


ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.