Hiding a rare and complex disease

By Sophie, Behçet disease, United Kingdom, February 10, 2020

My name is sophie and 3 years ago my life was changed upside down.  I have always been this bubbly, happy child who sees the best in everyone, even to this day. I would try and live my life to the fullest.  In 2018 was our first holiday to Turkey with the my family. It was great the sun was out I was having fun, eating ice cream and literally anything from the bar, but then came the second week before going home I came extremely ill. Everyone thought it was heat stroke or food poisoning but I was not throwing up, so It didnt make any sense. I had stopped eating and drinking, I would sit in the shade and sleep all day, I stopped going in to the water and playing with my brothers. I had no energy at all. One of the days I woke up feeling better so we decided to go down to the market, after a little walk around I was getting extremely hot and tired, the next thing I know I had grabbed on to my mum as I am falling to the ground passing out, I could hear everything that was going on around me but was not able to open my eyes. I heard a young lady paramedic who was also on holiday with her family had came over to help, she was lightly spraying water over my face to help cool me down while checking my pulse and gave me some dried mango once I had regained consciousness.

My condition just got worse after that, I had become dehydrate from not eating or drinking, I just wanted to sleep. On the day of going home I was relieved because even though I was ill I could go to the hospital and be in my own bed, while in the queue at the airport I had got light headed and slightly passed out but this time was conscious, I don't really remember much after that but I do know I fell asleep during the whole 4 hours flight back to the UK. Two days after being home I had developed over 10 ulcers in the back of my throat, (I was still so hungry) and 1 massive genital ulcer making it impossible to go to the toilet. I was rushed to A&E, where I stayed for a week having many blood test, swaps, and scans taken. They had no idea what was going on with me. My HLA blood test was extremely high, meaning inflammation throughout my body and bloodstream.

It made me angry because doctors kept on assuming I had herpes and was lying to my parents, eventhough I was a virgin.  My mum began to do her own research to try to link all of my symptoms together, it was positive I had an autoimmune disease just unsure which one it was. She had found an illness called Behcets disease and every symptom was identical to it, my own body was attacking its self thinking I was some kind of virus a couple of doctors believed glandular fever was the trigger for my body to go in lockdown mode but was not able to find when I had it. It was almost like the illness was dormant and finally erupted like a volcano in Turkey, an hour later a doctor had came in a confirmed I had it. They kept my in for another 2 days to monitor my symptoms, finally I was getting better after being put on a drip and liquid antibiotics, I could go home, but nothing went back to normal after it was up and down from the hospital with regular appointments and test.

It felt like I no longer had a life, that I was this ill teenager who would never get better again. I was angry and sad because they had know idea as to why I would have this disease, even to this day they are still unsure amd saying I was possibly born with it but found no genetic connections and that there is no cure for it. The worst thing is that because it is an invisible disease everyone will say "well you dont look ill" "your a teenager you can't be ill", I would want to either rip their throats out or cry although I try and no longer let it bother me, I dont owe them an explanation into my life and I am happy because i have finally found a way to manage it, I am taking all my medication (when I hate it) eating foods I know my body will like and not react to, I actually have my life back, i still have to be careful with everything I do, because if I catch a cold or anything it can lead to something bigger and can end up being fatal. Luckily I have friends who are also living with autoimmune diseases so I have some one to talk to and understand.

I never thought my life would get to some what normal but here I am studying my first year in a BA Hons costume construction with connections to the Royal Opera House. I will not let my illness beat me, instead I work with it, if my body is happy and healthy then I am happy and healthy which equals balance. 

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