Losing my young adult daughter to M.E
May 7th-13th is M.E Awareness Week 2018. Clare Norton is the mother of Merryn Crofts, who sadly passed away from terminal M.E at the age of 21. Today, Clare talks to us about Merryn’s Legacy, and her personal campaign to raise awareness of the condition.
Thanks for sharing your story with us, Clare. Would you like to introduce yourself and tell us a bit about your daughter Merryn?
I’m Clare and mum to Amy aged 24, Merryn who died aged 21 and Lara who died aged 8 days old.
Merryn was always a really loving and loveable child. She was a bundle of fun and mischief, stubborn, loyal caring and she loved her hugs no matter how old she was.
She was a beautiful soul who always thought of others and would do anything to help if she could. Even when she was so very ill she continued supporting other chronic illness sufferers online.
When she was told her condition was terminal her main thoughts were of her family and loved ones. She wrote us a letter to be opened after she died, it took her over a year to write as she could only type a few words at a time on her phone.
That is the kind of person she was.
Merryn lived with Severe M.E for six years before she sadly passed away. How would you describe M.E to somebody who hasn’t heard of the condition before?
ME is a thief. It steals everything from the sufferer’s life. It is an illness of loss and isolation, Severe ME has been described as a living death.
The medical answer to that is that ME is a neurological condition. It is a devastating multi systemic disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems and often follows an infection.
It is characterised by Post Exertional Malaise (PEM) which causes a reduction in functioning and severe worsening of symptoms after even minimal exertion.
ME can affect people Mildly, Moderately, Severely or Very Severely.
Hearing that Merryn’s condition was terminal must have been unimaginably difficult. How did you as a family prepare for her passing, and what advice would you give to somebody facing a similar situation?
It was heartbreaking being told that Merryn’s very severe ME was terminal, although part of me already suspected it. When I look back over the course of her illness she had been progressively deteriorating with no remission.
This may sound strange but there was also a feeling of relief that her pain would end but then devastation that the only way that could happen was if she was no longer here.
I couldn’t advise anyone else on what to do but we listened to what Merryn wanted. We had always talked openly about everything as a family and this was no different, although talking was very limited for Merryn so everything had to be done at her pace over a period of time.
She had a bucket list of things she wanted to do if possible and we helped her achieve what she could, from bringing Christmas forward to arranging a shopping trip from her bed.
It was also really important for Merryn to plan her funeral. I think this helped her feel in control when everything else was out of her control. She worried that doing this would upset me but it helped me too as I felt it was something I could do to help her - as her mother and full-time carer, I felt totally powerless to do anything that helped her or eased her pain.
It almost felt like her funeral became the wedding she wouldn’t have. She wanted a white horse and carriage, a cake with her photo on, photo boards at the reception and a balloon release – she wanted it to be a celebration of her life. She picked poems to go in her order of service and the clothes, shoes and sparkly headband she would wear. She made the day easier for all of us as we knew we were following her wishes, so typical of Merryn.
What helped us was to be open, talk and not avoid the subject.
Over the last year, you have been campaigning and raising awareness of M.E in honour of Merryn. If there was one thing that you could change about the way the condition is currently diagnosed and managed in the UK, what would it be?
The obvious answer to this is funding for biomedical research but I will instead say education of the medical profession.
Having an illness such as ME is difficult enough but on top of that is the additional stress of being disbelieved when accessing medical services (and also from family members and the general public) and the harm this disbelief does. We experienced disbelief and belittling of symptoms numerous times both before and after a formal diagnosis was made and we know this is a common experience ME patients suffer.
Finding a doctor who knows the condition and believes the patient is like gold dust, and means so much. This is how small the expectations of ME patients are.
Belief, early diagnosis and the correct advice mean the world, and can prevent deterioration of ME from mild to severe.
So, my small wish would be that doctors listen to their patient and respect their illness.
And finally, an inquest is being held into Merryn’s death in the near future. You’ve spoken before about how important it is for M.E to be recognised as the official cause of death- why is this?
It’s important as we have no idea of the amount of deaths related to ME as no records are kept. There is currently no diagnostic test for ME but I suspect there are deaths that are related to ME but not recorded as such.
There is only one person in the UK to date who has ME recorded as their Cause of Death from evidence found in her spinal column. Merryn would be the second and that begins a pattern. It would show there are physical findings to be seen if the pathologist knows what to look for. This could then become standard to check in all post mortems where the person had a diagnosis of ME.
It would also be vindication for all the sufferers of ME who have been disbelieved and told it was all in their heads, and ultimately it could also inform research into identifying a bio-marker and ultimately treatment. To this end Merryn donated her spine and brain to The Ramsey Research Fund who conduct research into ME.
May is M.E Awareness Month, and Merryn’s story has been featured in a BBC Newsbeat documentary, live on BBC iPlayer from the 8th May. You can keep up to date with Clare’s campaign by visiting Merryn’s Legacy on Facebook.
We're discussing Death and Bereavement on the community this week. If you've been affected by this piece or by any recent discussions on the forum, there are organisations who can help. Cruse Bereavement Care have a helpline and support resources available online, and you can also contact Samaritans 24/7 at 116 123 (UK), or by emailing [email protected]