People with ME do matter.
That’s the message from Elizabeth Ruffley, of Ansdell – who has ME, a chronic neurological condition which affects more than 250,000 men, women and children in the UK.
The 63-year-old was once incredibly active, but was diagnosed with the condition in February 2011 after feeling increasingly exhausted.
The mum-of-two said: “The symptoms have completely changed my life. I was a singer and dancer on the amateur stage, I went swimming two or three times a week, I enjoyed ice-skating and walks on the beach.
“I’ve had to stop all my hobbies as well as my work.
“I only have a few close friends who support me and who understand my inability to join in most social activities.”
According to charity Action For ME, many people with the condition face isolation and ignorance, as friends, family and professionals struggle to accept the true impact of the illness. By sharing her story for ME Awareness Month in May, Elizabeth hopes to get across the message people with ME matter.
She said: “Having ME has meant I am unable to join in certain socials my friendship group organises, such as days out involving walking, holidays and evenings out that are not within easy distance of my home. This can make me feel excluded and isolated.”
Thankfully, Elizabeth’s friends understand her limited abilities and try to make adjustments and are sympathetic if she cancels plans.
People with ME experience severe, persistent fatigue associated with post-exertional malaise – the body’s inability to recover, after expending even small amounts of energy.
This leads to flare-up symptoms, which can include chronic pain, difficulties with concentration, thinking and memory – known as “brain fog” – and problems with the nervous and digestive system.
As it is an ‘invisible’ illness, those who the condition often battle against a lack of awareness among the general public, and some parts of the medical profession.
Elizabeth, a former project manager with the DWP, said: “From the outside, to other people, you seem well, especially if you try to keep positive. It’s not like a broken leg that you can see.”
She copes with the symptoms of ME by balancing what energy she has, with rest periods.
But there is no cure for the condition. And a quarter of those with the condition are so severely affected they remain bed or housebound.
Elizabeth said: “When people look at me, they don’t see ME. It’s about getting across to people it’s invisible but it is there.
“I try to stay positive, but I do get frustrated at times.
“I’ve had to adapt and change more hobbies, now I do things like colouring, reading and meditation. There is a grieving process for the life you had before.”