Joyce Currie

Joyce Currie’s Unseen Struggle with Chronic Fatigue Syndrome

At seven years old, Joyce Currie knew she wanted to become a teacher.

She spent most of her teenage years in Bangor babysitting before heading off to Stranmillis University College to get the golden ticket she needed to achieve her dream.

Then, after lots of late night study sessions and hard work, she landed her first job as a primary school teacher in Belfast and poured her heart into giving the next generation the tools they needed to succeed just as she had.

In the years that followed, Joyce learned the true meaning of multi-tasking when not only was she looking after a classroom full of young children, but she was also raising three of her own as well.

But a wave of exhaustion began to crash down on Joyce, one which she couldn’t explain. She had dealt with recurring tonsillitis and other viruses growing up, but usual fixes like antibiotics and rest were no longer working.

She went to her family doctor, who told her the symptoms sounded similar to multiple sclerosis (MS) but that it would be a “process of elimination” to rule everything out.

“I was working full-time, three kids, but up until then I had been fine,” she said.

“I was putting it down to my age. I was in my forties and I was beginning to think it was just getting older, maybe hitting perimenopause, all those things.

“I was trying to work it out, struggling to do my job properly and be a mum properly.”

Soon after her energy levels began to drop, Joyce started to experience pains and, most concerningly for her career, brain fog which would often disrupt her teaching.

She explained: “I’d be standing in front of the class, and it was a primary six class at that stage. I was trying to explain something because they were doing transfer tests and I was going, ‘Now it’s…’

“This is not me because I was sharp as a tack and in the classroom of 30 kids, you have to be on your toes and this wasn’t me.”

Several medical tests still could not pin down what Joyce was experiencing, but she persevered to get the truth.

“I just wanted to know why it was happening,” she said.

“I’m quite an easy-going person, but you know your own body and you know when something isn’t right and I was determined to get to the bottom of it.”

Then, after a two-year-long wait as she was experiencing her self-described “big crash”, Joyce finally got the answers she was looking for.

She said: “After two years of literally torturing the doctors, he said to me, you have chronic fatigue syndrome.

“It was nearly like a light went off, now I know.

“But he said give it five years and it’ll burn out - I sort of clung to that.”

Twenty-four years later, however, at the age of 68, Joyce is still living with myalgic encephalomyelitis (M.E.) - otherwise known as chronic fatigue syndrome.

Soon after her diagnosis, Joyce said she experienced her “worst period”, but desperately tried to keep teaching. However, the exhaustion just became too much.

“I was in and out of bed. I would have got up with the kids going out in the morning, got them all out, made the beds, put on a washing and then went back to bed.

Without knowing it Joyce began pacing - or breaking up activities throughout her day - in order to manage her condition but struggled to get this across to people, even to her own husband whom she eventually divorced.

“The way I used to say to people was imagine the worst flu you’ve ever had and how you feel with that - that’s what my life is all the time,” she said.

Since her diagnosis 24 years ago, Joyce has tried to live her life as normally as she can like attending social events, but has gotten into the routine of setting time limits for herself so she does not become completely drained of her limited energy.

And like every chronic illness, there are good and bad days.

At her worst, pains in Joyce’s throat can make it difficult to swallow or open her mouth. She’ll even struggle to lift her head off the pillow to take drinks of water, often needing to rely on pain relief to get her through even the most basic tasks.

It’s only been in the last few years that Joyce’s rollercoaster relationship with her chronic illness has remained “steady”, and she can now say yes to things that would have been unthinkable before.

She said: “You learn to live with it. If you know you’re going somewhere, you can build up your reserves for a couple of days and go to the event or whatever it is.

“It’s ok to say no, that I’m not able to do that today - you have to protect yourself.

“There’s no point pushing yourself to the detriment of your health for maybe a few months. Learn to say no, in a nice way, but people who know you can accept that.”

As Joyce approaches the 25th year of her diagnosis, she has found her home in support groups, like Hope 4 ME, where other members know exactly what she’s going through.

There have also been breakaway groups so members can do things they are passionate about together, such as arts and crafts, from the comfort of their own homes.

“There are girls on that Zoom who are alone in their bed and literally can’t lift their heads, but they want to join in for the craic,” Joyce said.

“It’s not all doom and gloom.

“One might say it’s a bed day today and we say that’s fine, or they might just sit and listen, but they can have fun. They can come and have fun about the condition.

“They are very good, and you can message if you’re having a bad day and then you’ll get a few wee hearts coming back or pen pals or something like that.

“You just think, here are people who know what I’m going through today and understand it.”

Despite the struggles she faced throughout her journey with M.E., Joyce urged others like her not to “give up hope”.

“Out of every negative situation, I think a positive comes out of it 100%,” she added.

“Yes there is no cure, but don’t give up hope that you can’t live and fulfil life.

“Your life changes, that goes without saying, but accept those changes and embrace what you can do and not what you can’t do.”

If you or someone you know is suffering from or needs more information on Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) Contact us