Stroke survivors found solace in speaking with others who also had experienced fatigue. It was a relief when, often, even friends and family had difficulty understanding the condition, its unpredictable nature and that the triggers do not always follow common sense. Here are some of the things participants shared about this frustration in particular.

“So many people say to me, ‘Oh, you’re fatigued, you’re tired? What have you been doing today? Have you been too busy? Have you be doing too much exercise? blah, blah, blah.’ I could go on a three-hour walk and come home and be fine. But take me into a café and put me with children playing and the noise of the coffee machine, and people trying to have a conversation with me and I can’t cope anymore.”

“Leave me to go on a walk in the quiet in nature. I’m absolutely fine. It’s very tricky. Try to explain that to anybody who’s not experienced fatigue before or hasn’t come across it.”

“I think you, you were probably the first medical people I had seen, and I had seen dozens and dozens of different neurologists and doctors, who weren’t surprised that I could run, and still have post-stroke fatigue. If I had said, ‘I’ve done a half marathon.’ a lot of doctors would have just wiped it off. And that was it, I haven’t got fatigue.”

“With physical stuff, there’s not a problem. It’s the mental stuff that causes fatigue.”

“I think all of us will be able to remember many times when people have said to us, ‘You don’t look like you have had a stroke!’ or ‘It can’t have been a bad one!’. There is a competition for the level of disability that you’ve got post-stroke. They can’t see the fatigue.”

“People say, ‘Oh yeah, I get tired doing that.’ and you just think, ‘You just haven’t got a clue as to just how disabling it can be!'”

“When you go abroad and it’s hot and its sticky and you see local people going about their day and you are thinking, ‘Why are they wearing a jumper and a jacket…and a scarf? I’m absolutely melting!’ That is how I think, ‘Why can’t my body cope? Why is the energy just drained completely from me when I haven’t actually done anything?’

‘My main fatigue symptom is about getting my thoughts clear because it’s all a jumble.’