The story of Sophie

2017!! The hardest year of my life, fighting with my own body, doctors and hospitals. That year I had gone away on holiday to Turkey, it was beautiful and extremly hot, even the locals were saying it was unusual weather for them. There’s me thinking it was going to be amazing, perfect summer tan here I come, but NO come the end of the holiday my body started to shut down. I was fighting to stay awake, eat and drink. I was completely dehydrated and spent rest of the holiday either in bed or on the toilet, I was adamant that I was not going to hospital as there was only 3 days left on to the holiday. I believe that due to the heat and also the trip to the freezing water Gorge it was a trigger for my body going into shock and overdrive. It didn’t know what to do. On the journey coming home I had passed out in the airport before getting on the plane and even though this flight was 4 hours long I have no memory of leaving the runway or getting in the taxi back in England. The next day we went to the doctors and was immediately sent to hospital. I was freezing but my temperature was alarmingly high, I was covered in ulcers from my throat and throughout my whole body, total count I had 12 ulcers in my throat. They were unable to find a vain to put the IV drip in due to dehydration and they had to just keep on poking me till they found a hint of one, come this point I was bruised and completely exhausted. It took over 2 hours for my to get moved from A&E into a ward, where I basically then became a lab rat for all the doctors, I was there for 6 days with no clue what was wrong with me. Doctors that weren’t even my doctors started to come in to see how many ulcers I had, I became a fascination for them, even trainee doctors where come in as part of their training to see and check my over to try get their opinion on what they thought could be wrong with me, before all this I was a perfectly healthy normal 17 year old.
Due to other ulcers on parts of my body, doctors kept trying to convince us that I had herpes and that could go home, bearing in mind I’m a virgin and was extremly ill still. They stopped doing their job after convincing them self what I had. In 6 days I must of met half of the hospital staff in my room. Out of all of them 1 doctor was kind enough to promise to find out excatly what was wrong with me, he was the only one that believed me.
During this time my mum was also conducting her own research folder cross examining everything that was wrong with me linking it to triggers with the heat and cold, linking the past health issues and finally came across something called Behcets Disease. Out of all the the Doctors my own mother was able to diagnose me before they did. It must of been about 3 hours after we found this rare disease the doctors had confirmed it to me. I was relieved that they had found something but also scared as I knew this would change my whole life. They were all so confused yet again fascinated about how someone so young with no other genetic history of this illness and no foreign decedents in the family how I had this disease. Making it extremly rare and for me to be the first carrier for the autoimmune disease.

After this everything changed, I was put on steroids that made me puff up like a balloon, being to ashamed to leave the house or go to school, I would sleep for days, while putting on wight due to medications, it was continuous hospital visits, sometimes 3 times a week as well as blood test every week. I stopped feeling like a teenager and more like a patient. My ulcer flares were frequent every month lasting for 2 weeks making me unable to eat, only drink. I lost a lot of friends due to them not understanding and getting annoyed that would no longer go out due to having no energy or I would agree to plans then cancel last minute due to a surprise flare up. I was then put on to oral chemotherapy which resulted into me losing a lot of hair.

It took about 3 years before the medication I was on was starting to mange my illness, I was slowly getting my life back, I had started college and was working my way up to doing a degree. Which I graduated from in 2022, I wasn’t completely cured and I never will be due to it being an uncurable Disease but it can be control with the right medication if taken everyday for the rest of my life. Just when I thought I as getting back on the right path was was thrown of it with a brand new diagnosis of Crohn’s Disease, my whole life I have had gastro issue way before my Behcets diagnosis however just assumed it was that, again it was a shock to get another chronic diagnosis this time at the age of 22, my life routine was changed again, I had to change my diet completely, watch everything I drank and eat that could be a trigger. Even stress would be a trigger for me, at this time I had lost 2 stone due to me being afraid to eat food as I didn’t want it to trigger me, the pain I experience during a trigger is something that I will never be able to explain, but it enough pain for me to wonder if just ending it all would be better. However I now have a healthy relationship with food, I have learnt excatly what I can and can not eat and my illness is now being controlled with an self administrative injection every 2 weeks. Having an autoimmune disease it is extremly common for there to be another cross over disease. Mine just happens to be one of the worst cases of Crohn’s Disease.

I feel like I lost a part of my younger self throughout the years of 2017-2019, I stopped being a normal teenager, I couldn’t do the things that normal teenagers could do, I spent more time with hospital doctors than my friends but if I did not I would never be on the medication now that has given my life back to me, I’m happy, have a job, somewhat healthy, I’ll be going traveling soon so everything I lost back then it has shaped me into the 23 year old women I am now.