Having lupus sometimes feels like being a sergeant in the Army. Having to be strategic, strong, determined and always trying to win a war by facing many battles. Some battles I have won and some battles I have lost. My journey started when I was 17 and before my diagnosis in 2000 I had never heard of Lupus or had any comprehension of how much my life would change because of it.
Like many Lupus sufferers my journey started with a multitude of symptoms leading up to my diagnosis that I didn’t think were attributed to anything specific. I suffered from sore red eyes in the middle of winter (jokingly friends ask if I was taking drugs), joint pains, fatigue and gastrointestinal problems.
By the time of my A level finals my symptoms (which had now been attributed to stress) had got worse, when my exams were over and after several trips to my GP. a routine blood test showed I had development anaemia, serious enough for me to have to go straight to hospital from the GP’s.
I had been in hospital for over a month before I was diagnosed. I remember that day clearly, a bunch of people in lab coats entered the room I was in at Guy’s hospital, they had leaflets with them and all looked very serious.
They talked though my diagnosis extremely well and very clearly but the one thing I can remember them saying and that stuck with me was. ‘sorry we have to tell you this, but there is no cure’. I asked if they were sure and they said yes, but I was just relieved, finally this thing had a name and all these symptoms I was experiencing were not in my head. I don’t think I took my diagnosis seriously at the time. Not that didn’t feel what I going through wasn't serious but I was young and had been in hospital for over a month, I had even spent my 18th birthday in hospital, I had been poked and prodded and suspected of having meningitis, Crohn’s and even a haemorrhage at one point.
All I wanted was to go home and having a diagnosis meant I could. On top of that, having struggled and completed my A levels, I was determined go to university. Just like an army general negotiating peace treaty I negotiated with my medical team to convince them I would be alright going to university. There were some rules I had to follow, I had a ton of medication I had to take, I had to visit the hospital weekly for check up’s and agree if I showed any signs of a flare I would leave. But going to university felt like I had won and that I could put everything I had experienced behind me.
University went well enough, for someone with an invisible illness that didn’t tell anyone. Looking back I wish I had been more open about my illness with my tutors as there would have been support to help through what I was dealing with.
It was during my 3rd year finals when the familiar symptoms I had experienced at the start of my lupus journey resurfaced which I ignored until I had finished my exams. It was pretty stupid of me as I was clearly flaring, I don’t remember what I was thinking at the time, I guess I thought I would wake up and my symptoms would get better on their own, they didn’t and I spent the next three and a half months in hospital which also involved spending my 21st birthday in hospital.
At risk of this sounding like a medical report let’s just say my time in hospital was hard and included being in intensive care and having an operation to remove fluid from around my heart. But it taught me the biggest lesson of my lupus journey, that although I understood having Lupus was serious, I didn’t think it was important. Lupus was serious when I was ill but not important when I wasn’t, but Lupus is important even when you’re not flaring and you shouldn’t ignore symptoms. I learnt that it’s important to look after myself even when I’m not flaring and should accept I have trigger to be flaring and avoid them. After that I was what you call a 'modal patient', taking my medication became a part of who I was, I never skipped a hospital appointments and never ignored a symptom again. And for 8 to 9 years my lupus was silent.
In 2011 after a prolonged period of stress my lupus came back and this time it was more aggressive, more resistant and just would not go away. For the next few years it felt like I was either recovering from a flare or experiencing one, each time I flared I was hospitalised and each time a more aggressive treatment plan was put in place. It took the next few years to get my lupus under complete control but by then the damage had been done.
In 2015 I was told my kidneys would fail, we didn’t know when, but I would need a kidney transplant. I remember the disbelief and thinking how could we put a man on the moon but there was no magic pill to stop my kidneys from failing. But I remembered how far I had come since the start of my journey and if it wasn't for the treatment available I might not have been here today.
It is my hope that one day through research we can prevent kidney failure from Lupus, I felt so strongly and passionate about lupus research that it had led me to job working in Lupus Research which I love.
I lasted a year before I my kidneys finally gave out and have been on dialysis since 2016. I opted for peritoneal dialysis as I was working and it fitted in with my lifestyle more. Life on the transplant list has had its moments but has been made much easier with the love of friends and family and support from my lupus and renal teams. I know being on dialysis is a means to an end and ironically lupus is often more controlled after a kidney transplant so I'm looking forward to the days of life without dialysis and hopefully lupus. In the meantime I am enjoying adding to my post-transplant wish list and giving back to the lupus community which helped me deal with my Lupus. You can follow my story on my Instagram account: luppie_Lu