My name is CJ Brown, I’m 22 years old and I live with lupus.
When I was around the age of 7-9 years old, I kept falling sick. I would keep having chest infections and my mom would bring me to the hospital. The healthcare professionals would say “it’s just a chest infection” and the only thing they could do is prescribe antibiotics and send me home, believing that would help me get better. Months would go by and I would come down with another chest infection and the doctor would do the same thing he did previously. They did the basic checkups, but no blood tests. A couple of months would pass and the same thing would happen again. For me, I just thought I had another chest infection because it was basically normal at this point and that’s what the doctor was telling me, so why would I think otherwise? That’s how my mom felt as well.
When I was 7, I went to Jamaica with my mom for a holiday trip. One of the days we were there, I woke up and my legs just stopped working. I couldn’t get out of bed to walk or do anything. Looking back, this could have been the lupus slowly attacking my body. To be honest, I was quite scared because nothing like that had ever happened to me before. We went to the hospital and from what I remember, they did normal routine observations. This consisted of the nurses checking my blood pressure and my temperature (which wasn’t a lot really, I would’ve expected them to do a blood test to find out the cause of it). They gave me an injection and after a couple hours later, I felt better and I was able to walk again. But at this point, my mom and I still didn’t know if there were some internal issues going on with my body.
Having come back to the UK after our holiday was finished, everything was going well with my body. But then I started having a cough and cold again, which was basically normal to me. It was also that time of year where most people got the odd cough and cold here and there. Again, the doctors did their basic check overs, couldn’t see anything wrong, so they sent me home with antibiotics and said that should help me get better. The antibiotics I was given did help, but only for a short while. It sorted out the little problem that was going on, but the bigger problem that was going behind the scenes was still happening.
A couple months later, I noticed my elbow was quite swollen and was causing me a lot of pain. My mom looked at it and it was very swollen so she took me to the hospital. They ran some tests on me by taking some of the fluid out of elbow. It came back that I had septic arthritis. They had to do an operation to get all the fluid out of my elbow and bring it back to normal. So, in October of the same year, I became ill and again with another chest infection. My doctor decided to run some blood tests on me, the main one testing me for lupus. The results indicated that I did have lupus. When I received the news about having lupus, they did some other checks and they could see that the lupus had been damaging my kidneys and my heart, causing me to have kidney failure and heart failure. As a child hearing that, I don’t think I was that bothered because I didn’t know what it meant for my life. But for my mom, seeing that her child will have to go through a lot of ill times, it got to her.
Through this journey, my mom and I have fought it together and she has been by my side every step of the way. The symptoms I mainly get are swollen joints to the point where I can’t move at all or when it’s cold, my hands change colour. Sometimes, I experience memory loss which I didn’t notice was a symptom until writing this. What’s life like with lupus? Honestly, it has its good days and bad days but push through it and try not let it get to me. For those who feel they can’t push through it, there is support around to help you get through the struggling times. I would like more people to know about lupus because it is one of those illnesses that not many people hear of and can cause damaging problems to your body.
By CJ Brown