“I used to do a lot of walking and family days out, most Sundays we would go on walks to forests and beaches.
“I would spend time with friends and have sleepovers. I don’t see my friends any more. I had to leave college. Having no energy every day is the worst part.”
Katie Wyatt, 17, from Bognor Regis, has ME (myalgic encephalomyelitis, sometimes known as chronic fatigue syndrome or CFS/ME). This chronic, fluctuating neurological condition affects thousands of young people and is the most common cause of health-related long-term school absence.
People with ME experience severe, persistent fatigue – very different from ordinary tiredness – associated with post-exertional malaise, the body and brain’s inability to recover after expending even small amounts of physical and mental energy.
This leads to a flare-up in symptoms including chronic pain, difficulties with concentration, thinking and memory (known as ‘brain fog’) and problems with the nervous and digestive system.
Simple physical or mental activities, or combinations of activities, can leave people with ME feeling utterly debilitated.
“I am rarely able go out and if I do go somewhere, such as the supermarket, this results in me being exhausted and in a lot of pain,” Katie explains.
Katie’s mum Sarah said: “As a mother it is really hard watching your daughter going from being a happy-go-lucky child to having no energy to do the things we used to do as a family and who is in pain most of the time. Katie has lost all her close friends because they don’t understand her condition.”
A lack of understanding and awareness about the illness means children and adults affected by ME can experience disbelief and discrimination from employers, colleagues, teachers, health and social care professionals and even friends and family.
Katie said: “I would like people to understand it’s not just being tired. People with ME are exhausted and have to battle with many more symptoms, like pain and brain fog.”
Katie is sharing her story for Action for ME’s 2019 awareness campaign, Are you missing ME?, hoping to raise much-needed understanding of the condition.
Mary-Jane Willows, head of children and young people’s services, Action for ME, explains: “It’s so important to raise awareness and understanding of the impact of ME, to tackle the ignorance, injustice and neglect experienced by thousands of young people, like Katie, whose lives have been stolen by this debilitating illness.
“These children and young people need the right support to access education and healthcare that meets their needs, and we are here to help. If anyone, of any age, reading this needs information and support about living with ME, please get in touch.”
Go to www.actionforme.org.uk