For a long time I’ve been feeling like my body is a bit broken, like it doesn’t quite do what it’s supposed to. It leaks blood, I have difficulty breathing and sometimes I have absolutely zero energy. Stuff kept getting worse until spring this year, when I had a kind of hilarious seizure over dinner in Nando’s. As I lifted my head out of a half-eaten jumbo chicken platter to see my friend shaking in fear next to me, I realised that something was probably wrong. One trip to A&E, a few episodes of immobilising fatigue and countless inappropriately-timed nosebleeds later, I’ve worked out the problem.
It turns out that I have a confusing blood disease called Gilbert’s Syndrome (pronounced the French way, obviously). It causes increased levels of a chemical by-product called Bilirubin, which is normally an indication of jaundice and makes me yellow when I’m stressed. Amongst other symptoms that I don’t really understand, my liver has problems detoxifying alcohol and drugs, I get abdominal pains, and eating processed carbs gives me headaches and really bad fatigue. I was diagnosed way back in May, but the effects crept up on me all summer and reached a peak in September when I was getting through a loaf of white bread and spent three days paralysed in bed, convinced I had the early symptoms of locked-in syndrome. Oops. Although there’s something a little Alice and Wonderland about being lulled to sleep by a slice of cake, it’s not great fun.
When the doctor told me I had the syndrome he made it sound like the best thing in the world. According to the NHS it significantly reduces the risk of heart disease and makes you more tanned than your friends. Hurray! The only issue here is that they’re lying. My dad has had open heart surgery and I kind of wish I was paler. Life is so hard when you have a non-life-threatening disease in a first world country.
However, there are, thank God, some angry online groups determined to spread the word about those of us who suffer fatigue and other complications due to our disease. I turn to their words when I feel the need for some blood dysfunction solidarity. I gleaned from certain sites that I can call myself a Gilbert, which is a bit cute, no? Here’s a comment on a YouTube vlog about being diagnosed (you can fill in the [sic]s yourself):
ok people we r all gilberts here …we should be happy and thank god cause we r really lucky …only 5 % of people have gilbert and they are well protected by the bilirubin against heart diseases and cancers …we live longer and have better health than other people…so smile everyone …and about the fatigue thing its ok ..not really that bad …and to the chick who posted the video here !!!! ur soooooo cute !!! lets marry and have baby gilberts me and u !!! yayyyyyy
Whoever wrote that is clearly annoyingly happy and not at all cynical enough, but hey. This other comment only made me want to turn all the lights off and cry in the corner:
I was diagnosed with it 9 years ago, i too get fatigued, sometimes get brain fog, thing i miss was all the energy i used to have, but, i still jog and excercise, good luck
There is one plus to Gilbert’s syndrome, though: the biological legitimisation of an aloof fashionista diet. I frown on you and your large fries as I nibble on miniature forkfuls of lettuce and goji berries. Just how polio sufferers pick up crutches and blind people adopt guide dogs, I dealt with my illness by purchasing a camouflage coat, hanging an SLR round my neck and starting a fashion blog. So eat your heart out Susie Bubble; I bet you hide pepperoni pizza in your Prada clutch.