Multiple reports indicate that Aimee Wellington experienced almost continuous exhaustion and often felt generally unwell and dizzy around her period for nearly two decades. Doctors continually assured her there was nothing wrong with her. Her specific symptoms included brain fog and stomach bloating that made her look eight months pregnant for a week or more.
Aimee Wellington's doctor ran blood tests for vitamin deficiencies and gut conditions, but they all came back clear. Three years ago, she spent weeks in bed with what felt like constant flu symptoms. At one point, a doctor suggested she was an emotional young woman and that her symptoms were all in her head.
I was told it was probably hormones or that I was borderline anaemic.
After switching GPs, Aimee Wellington was diagnosed with Gilbert's syndrome, a genetic liver condition caused by a mutation in the UGT1A1 gene that interferes with how the body processes bilirubin. Gilbert's syndrome affects around 5% of the population. Gilbert's syndrome can cause jaundice, increased sensitivity to alcohol, worse hangovers, brain fog, low energy, and bloating.
Gilbert's syndrome can increase the risk of gallstones. There is no treatment for Gilbert's syndrome. Aimee Wellington manages her symptoms by sometimes booking time off work after stressful or high-energy events.
But I always felt exhausted and run down when others didn't, which made it so difficult to find the energy to go out with friends, meaning I missed dinners and nights out.
The specific blood tests used for diagnosis and how long it took after switching GPs remain unclear, as do the most effective lifestyle strategies to reduce flare-ups.
I'd cope at a low level, then the symptoms would build again, so I'd go back to the GP, only to be told nothing was wrong.
He suggested I was an emotional young woman and that it was all in my head. I went home and cried. I genuinely questioned myself, asking 'What if he was right?'
I can go from being extremely active to barely able to get off the sofa for days at a time. I go to the gym six days a week and I love running – but during a flare-up, all of that goes out the window.
When I feel my symptoms creeping in, I sometimes book time off work to accommodate how well I know I'm going to feel after a stressful or high-energy event.