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My Lupus Diagnosis: The Beginning of My Health Journey

Last updated: May 2023

2009 was the year where my life changed forever. I had just celebrated my 18th birthday and had a big party with all of my family and friends. Life was on the up and up for me!

My mysterious pain

I remember waking up one day and my joints were hurting me. I was young, so at the time, I thought it was either growing pains or I just slept bad. As the days and weeks went on, I realized that the pain was not getting any better and I was now in excruciating pain. I could not walk and it impacted me playing football.

My life was becoming miserable while dealing with the pain, so my girlfriend at the time took me to my general practitioner where I explained my symptoms and they gave me some anti inflammatory tablets. They told me that after taking these for a course of time, the pain should improve.

Unfortunately, this was not the case and I then went back to the doctor and they ended up referring me to the hospital. At the hospital, I was told I would need to produce a urine sample and a blood test would be taken. When I arrived and explained my symptoms, I was told they was a 90% chance it was lupus, but was told they would contact me once they got the results back. It was the worst summer of my life as I was just waiting to hear back from them.

Receiving the bad news

My worst fears were confirmed. I got the phone call in early August and it was confirmed that I had lupus. I remember going to my gran's house and my family and I all started crying. I was thinking, what does this mean for my life? What do I do now?

The rest of the month, I was so depressed that I didn’t want to leave the house. The only place I went was to the hospital and on the odd occasion, my mum would force me to go to my gran's house. It was a big shock to the system and was going to take some getting used to.

However, one good thing though was that I had these two different treatments to help relieve my joint pains which were called rhytuximab and cyclophosphamide and after having these, I never experienced joint pains again! I then had to start going to regular hospital appointments at least twice a week so they could monitor my kidney function. I had to start taking medication and being that it was the first time I ever had to take any, it was an adjustment. I had a pill box with different tablets to take at different times throughout the day so it was a lot to take in at such a young age.

The fact that I didn’t know anyone else at the time apart from my great gran who was already on dialysis was hard for me as there was no one my age that I could get advice from and find out what to expect moving forward.

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