I was diagnosed with SLE in March of 2004, when I was 10 years old. I had been sick for most of my life and was greatly relieved to get a diagnosis and finally be told what I was going through wasn't in my head.
I was under 4 different hospitals as a child, including Great Ormond Street Hospital (GOSH), where I had brilliant and experimental treatments. I was told by my doctor that I was one of three children in the whole of GOSH who had lupus. Every time I went, there were more studies to sign up to and different doctors from other specialties would come to see me.
Due to my poor health, I was held back a year at school. This meant I was in education for a bit longer. The rules on when you transition then get fuzzy, and is slightly different for each hospital and each department.
In England, to go to Accident and Emergency (A&E) in the adult's department, you need to be over 16 and have completed your GCSEs. It was a stark change from the children's waiting room with other hurt and sick children to the adults waiting room, where there would regularly be drunk people and police.
With my rheumatology team, I was transitioned quite quickly. When I turned 18, I was told I would need to see doctors within adult services. It was extremely hard as I had the same rheumatologist since I was 6 years old. There was no preparation, I had begun to feel a little old in the clinics, but didn't feel ready to take this next step. The first time I went to the adult’s rheumatology clinic, I was the youngest person there. The receptionist told me that paediatrics was down the hall, a comment which stung. An elderly woman in the waiting room said I shouldn't be there, I was too little, and I felt like she was correct.
The new doctor was very nice, he never made me feel stupid for bringing my parents and was always very kind and patient. He was also not quite sure how to speak with someone so young and said he had never actually asked a patient what they wanted to be, it was always what did they do?
My transition from GOSH was slightly easier as I was still in full-time education and I had been a patient for a long time. I was allowed to stay until I was 19. They gave me a year of being in adult rheumatology before saying it was time that I needed to stop going there. They were very kind and a lot of the doctors and nurses I knew well came to say goodbye to me. It was hard as I had known these people for half my life. I trusted them to make decisions and guide me through the most difficult of situations and I wasn't going to see them again. There was a strange sense of loss that is hard to describe that no one prepared me for.
Leaving paediatrics also meant that I was going to university. There were a lot of changes going on in such a small space in time. My new doctor was very good. It was hard however that I was no longer special. An adult woman with Systemic Lupus Erythematosus (SLE) isn't interesting and not exciting. I felt a lot of my comments were just considered to be normal and my quality of life was much less considered than in paediatrics. It was odd getting used to having 1 doctor, rather than a team of doctors at 4 hospitals.
I am now 30 years old. I have been living with SLE for most of my life and in this time, a lot has changed, mostly for the better. I completed university and moved across the country. This meant as well that I would have new doctors. It is hard to transition into adulthood, being sick just adds a couple of extra steps in this.
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