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Zoe:

Zoe: "It was a teacher that suggested a possible diagnosis”

Zoe Galbraith, 20, is a music student at the Royal Conservatoire of Scotland (RCS), a world-leading performance arts school in Glasgow. Zoe developed M.E. at 16, just as she was preparing for crucial exams, and starting to work towards her dream of becoming a music teacher. The knowledge, understanding and support of some of her teachers enabled Zoe to continue her education, and make her dream a reality. Zoe used her experience to co-produce our How can I help? resource for teachers, so they can better understand M.E. and its impact.

“It was a teacher at school that suggested a possible M.E. diagnosis for me,” she explains. “Their dad had M.E. so they recognised the symptoms. It was a weight off me when I finally got an answer from the doctor as to what it was. I could see that people with things like dyslexia got one-to-one support, so why not me? But I was academically competent, so people could not understand why I needed support. They would say: ‘You get As, so why are you not able?’”

Before she became ill with M.E., Zoe was a competitive diver for Scotland, and trained three or four times a week. That all changed, as symptoms forced her cut back on the activities she loved. Her friends found it hard to understand.

“I lost contact with so many friends, with my diving friends, as I couldn’t go. And friends at school just didn’t get it. They would say: ‘I’m tired too, I must have M.E.’ They just didn’t understand that it was different.”

Zoe’s school allowed her to access external self-management support, during school hours, something that Zoe says was key in learning how to manage her condition and still pursue the things that matter to her. The school also supported her to study a part-time, reduced timetable, and access school flexibly, using a sign-in sheet to make it easy for her to attend when she could.

“I was living nearby school so could easily go home and come back as I needed,” she says. “I had a study skills support session with support staff every week, and I really missed the support of this person when I left. I was also given access to the lift, so I was able to use this on days my symptoms were worse, and a room with a bed where I could when I needed a rest.”

Teachers who understand M.E., thanks to their personal experience of the illness, have been a source of invaluable support for Zoe.

“One of my instrumental music teachers, who I saw twice a week, had M.E., so I talked to him a lot,” she says. “It was really only the music department that I could function in, as there was understanding there. Nobody else in the school knew about M.E., they dismissed it. So I wrote an essay about invisible illness, addressed to the teachers. They all read this and it did make a difference for some. It helped them understand what I was going through.

“I also had piano lessons, twice a week, outside school with the sister of the teacher whose dad has M.E. This gave my mum a chance to talk to them and get advice. They reassured her, giving her books and spending time with her.

“This teacher gave me pieces that allowed me to express what was happening in my life, which helped me to deal with it. They had grown up with their dad being ill, so they tried different things to help. With their support, I played at a couple of weddings, which was something to look forward to and work towards.”

Zoe manages her symptoms using an approach called pacing, a systematic way of balancing activities and rest, so that she doesn’t over-exert herself, leading to a flare-up in symptoms.

It took a couple of years for me to learn how to do this well. Now I am able to switch off. This means I can do my work and attend family things, too. I was not able to do this at school: by the end of the week I was absolutely dead.”

Everyone’s experience of M.E. is different, and sadly some people find that their symptoms do not improve. Others, like Zoe, with the right support, find they are able to progress.

“There is a lot of acceptance and awareness of invisible illnesses here,” says Zoe of the RCS, where she is studying to be a music teacher. “They provide a quiet spaces so that people don’t need to go home to rest. Through the Disabled Student Allowance, I also have funded taxis there and home which save my energy, so I can attend full days at university, plus software that makes it easy for me to capture lectures and listen to my own essays to correct. This makes it much more accessible and easier for me to work at the same level as others. They have supported me to build things up slowly over the terms, in a way that works for me.”

For more information about any aspect of M.E., including supporting someone living with the condition, please visit our Living with M.E. page.