Grab a cuppa and I’ll attempt to explain why we are supporting the #MillionsMissing protest on Saturday May 12th 2018.

My son has been diagnosed with Myalgic Encephalomyelitis/ chronic fatigue syndrome.  Having symptoms of chronic fatigue for years however two years ago it began to totally strip away his life.

In the very beginning he struggled to live, pushed through the pain and fatigue every day to try to be normal amongst his friends and teachers.  All the time he just wanted the people at school that worked with him everyday to try to understand.  He was punished regularly for lack of concentration, forgetting his books, not applying mind over matter in sport, not helping himself.

He was slipping away.

Slowly the pretence became too much and he began to get more and more sick.  At school they saw him fall asleep in lessons, to crash in the medical room unable to be roused but they still didn’t begin to understand what was happening to him, or to try.  At home he became unable to eat, hold a conversation and slept all the time.

He’s missing.

We fought for medical care to help our son only to realise at the end of the battle that there is nothing that can be offered to help him, no avenue we haven’t already explored, no treatment.

He’s missing.

So many times in the last few months people have asked me how my oldest is getting on at high school.  Usually these people know our family in some capacity; his old teachers, my old colleagues, his school friends from primary school.  The kind of people you just don’t see to chat to and catch up with every day.  When they ask the question casually in conversation they are not expecting to hear my response.

It is nearly 17 months since he stepped foot in school.

The shock is written all over their faces, it’s simply not something that they are expecting to hear.  I should explain more, I can see the cogs turning and the questions whirring around in their heads, ‘has he been expelled’, ‘are you home schooling’.  As they struggle to formulate a response to what I have said I usually jump in and save them by simply saying that he’s sick.

He’s missing.

I try to use it as an opportunity to raise awareness, to explain, but in reality often people do not have a clue what to say.  They look awkward and sometimes you can see that they had wished they hadn’t asked.  Any concern is always directed to the social aspect of his life.  I just can’t find the words to explain.

He’s missing.

The people who love him and that he needs in his life have stuck around – period.  He had only been at high school a year when he became really sick, those friends have flown, they are growing, living.  His school did not encourage any contact at all; socially, academically, from teaching staff, the head of year, from friends.  There is only so many times you can ask for him to still be included in a community before you realise that he doesn’t belong.

He’s missing.

I wish that people could see into the darkest points of the last two years when he has been sleeping 20 hours a day, barely consuming a meal and sitting in darkness in his room to avoid the day-to-day noise of the family.  Just this snapshot would explain it all without me having to try to find the words.

He’s missing.

There have been other people who I have met and because they only ever see me with my two other children don’t realise that my oldest son exists at all.  Out loud I smile and reply ‘Oh yes I have three children’.   In my head I just whisper…

He’s missing.

An estimated 250,000 people in the UK are living with ME/ chronic fatigue syndrome, with many bed-bound and completely dependent on care.

Symptoms of the illness can include devastating fatigue, digestion issues and brain fog – but many doctors still don’t understand it.  Teachers and school staff don’t begin to comprehend the impact it has on young people yet it is the single biggest cause of long term absence in school.

Current treatments for the condition are being reviewed after years of controversy by NICE – the organisation which sets best medical practice.  In my opinion this review can’t come too soon.  It’s after consistent fears that the standard NHS treatments may be making people worse.

So our family will be at Millions missing London on Saturday May 12th 2018 at BBC Television House to represent the missing.  To come together.  To fight for research.  For understanding.  To be heard.  

Find out more about the #MillionsMissing campaign here. 

Or grab the tissues and find out about the devastating impact ME/cfs has on families by watching this 30min BBC Newsbeat documentary ‘M.E. and me‘.  This video is not available through the BBC app but you can view it on iPlayer by clicking here.


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4 Comments

  1. Your story is oh so familiar to my daughters, we live in Australia, she is now 26. She also has EDS Hypermobilty plus the other syndromes that are connected to EDS and CMT X-linked. She got through school, just, and actually skipped a year when we moved states still topping a lot of her classes with a lot of hard work. University is when she started to become missing, when she was 18. She is very intelligent but she now spends 23 1/2 hours a day in bed mostly sleeping or trying to cope with pain and migraines. We struggle to find a solution for her to be able to go out and follow her dreams. Plenty more specialists on the horizon hopefully they will be able to provide some relief soon. We are a member of a few supportive groups with the same ailments and we have found them to be very supportive, I don’t know how we would have managed without them. Thankyou for sharing your experience to know we are not all struggling alone. Take care xx

    • Sarah Wells Reply

      Hi Julie, I am sending loads of positive healing hugs to your daughter. To have your life suddenly turn into and existence is impossibly hard, bless her heart. I don’t think that EDS and CMT is a very good combination, throw ME/CFS in the mix too and there are lots of blank faces looking back at me in doctors offices.

      I know that being a mum to a sick kid is one of the hardest journeys I have ever travelled, feeling powerless to might of their illness’ while holding everything together for everyone else is exhausting. So I’m sending you even more love and hugs while you continue to advocate for your daughter at all the upcoming appointments. I really hope that they can offer some relief. I have a migraine preventative that has been amazing (from 3-4 attacks a week to 1-2 a month), so all options are worth exploring.

      Just like you, my online tribe have been a godsend, no matter how brilliant your friends are unless you have lived this you just cant get it. I have learnt so much from others that have walked this path before me.

      Take care, S x

  2. Very informative post. So sad that your son is suffering so. Love that you’re going out to support him though and love the t-shirts! Thanks for sharing his story and raising awareness. Hugs – all the best for tomorrow!

    • Sarah Wells Reply

      Thanks hun. It was a hard thing to do – not just physically but emotionally. Listening to people who have lost loved ones to ME or those that have struggled because no one including family believed them, its heartbreaking. He took it all in his stride and is really gald that we went. I dragged along half the family too which helped! x

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